| RT in Houston |
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06/30/2013 21:17
joshlin9693 
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06/30/2013 21:17
joshlin9693
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RT in Houston
I was just diagnosed 2 weeks ago. I have one lump on one cord in right hand. Middle finger will be affected. I have soreness in right hand and now have started to feel soreness and a stretchy feeling in my left hand. I feel weak in both. I have contacted Seegerschmiedt for info and would love to go there, but I do have insurance that will cover RT here. Anyone had treatment in Houston? I saw only one Texas doc on the list and he is in Austin. I did also call the U of Minnesota and they said they could work me in if and when I go for vacation this summer. Definitely would be nice to go to someone in Houston. I can't believe the US is not up on this. Wish Dr S would come here and do some major training!
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07/01/2013 23:22
joshlin9693
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07/01/2013 23:22
joshlin9693
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Re: RT in Houston
Just to let you know, I contacted UTMB in Galveston and asked if they knew any docs who could do RT. they gave me the name of a radiation oncologist. Met with him today. He said he could easily do it and has done it n the past with success. Gave me info to read and advised me on the possible long-term problems with radiation exposure-possible malignancy in the years to come (mentioned something like 20). Same 5 day and then another 5 day treatment plan. Thinking about doing it to nip this thing in the bud!
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07/01/2013 23:42
callie 
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07/01/2013 23:42
callie
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Re: RT in Houston
The problem of future cancer is very, very small. It is a "no-brainer" if insurance will cover it. Do it.
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07/02/2013 03:25
LubaM.
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07/02/2013 03:25
LubaM.
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Re: RT in Houston
joshlin9693,
I agree with Callie, you should definitely do it. Which hand to you plan to radiate? the one that has the nodule and cord or the one where it's just beginning? The Dr. who did my radiation therapy would only do it if there is are clear signs of active disease, i.e. itching, burning sensation, growth or increase in number of nodules. RT is not suppose to help with existing cords.
My RT in 2009 was very successful at stopping the progression of DD in my left hand for at least three years, after that time a cord started to develop that pulled the pinkie toward the palm after it started bending at the PIP joint. The rest of the palm is still fairly disease free and the itching, burning, pulling has stopped.
In 2009 I also had RT on two hard, marble size nodules on the bottom of my left foot. The nodules are 90% gone.
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07/03/2013 14:16
joshlin9693
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07/03/2013 14:16
joshlin9693
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Re: RT in Houston
I think I am going to do it. Can you have RT done more than once in the same hand and also both hands at the same time? Got an email from Dr Seegerschmeidt in Germany. He says that sometimes those docs not as familiar with this disease tend to miss problems that are still under the surface, they just treat the obvious nodules an cords. I worry about that. Also, just wondering if everyone feels sick all over in the beginning stages. I feel sore even up into my arms and then just feel kind of fluish all over...thanks for any input.
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07/03/2013 14:19
joshlin9693
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07/03/2013 14:19
joshlin9693
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Re: RT in Houston
Doc was just focusing in the hand with the nodule and one cord. He said my other hand is good but after I left I started to feel something under my left pinkie.
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10/14/2013 14:03
gnhoward 
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10/14/2013 14:03
gnhoward
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Re: RT in Houston
joshlin9693,
I am in Houston and have the same affliction in my right hand but it is in the early stage. Did you get the RT here, and if so, how did it go?
I have nodules that are affecting the classic ring finger and pinky, but am leery of any of the other options at this point. I can still lay my hand flat on the desk but this came on real fast so I wouldn't be surprised if it accelerates.
Any help you can give will be greatly appreciated - name of the Oncologist would be great. Also, did insurance cover part of it?
I don't relish driving to Austin to get it done.
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10/14/2013 15:10
Jolene
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10/14/2013 15:10
Jolene
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Re: RT in Houston
Hello gnhoward,
I had RT on both hands & feet 4 weeks ago. My insurance paid entire cost. To my understanding its all in how the office codes the treatment when submiting to insurance.
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10/15/2013 01:56
joshlin9693
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10/15/2013 01:56
joshlin9693
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Re: RT in Houston
Yes, I had radiation at St Joseph's in Houston on my right hand in early August. I will have a 2nd round 1st week of November. Doc did use the same protocol as Seegenschmeidt. No side effects at all. My insurance covered most of it. The bill was huge. If I had no insurance I'd have to go to Germany! I have not really seen any change in my cord or nodule. Some say that just the stopping of the progression is the success of radiation. The past few days both of my hands have been more painful. I have not been as careful with them as I guess I should be and now they are sore. I am hoping that my left hand will not begin to show signs of this disease...I will update more after my 2nd round. I am tempted to see a hand specialist that was recommended on this site just to see if there are underlying nodules or cords that the radiologist didn't know about. That was Seegenschmeidt's main complaint about docs here, they don't know how to find everything.
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